Feminist Artist Sini Anderson in Late-stage Lyme Disease

Feminist Artist Sini Anderson in Late-stage Lyme Disease

Sini, Melissa and Tammy Rae have done more than start a crowd funding campaign, they have introduced into the conversation things that often don't get talked about in the queer community unless it directly effects you. They have started a dialogue about chronic illness, disability and mobility. So far 274 people are engaging in this sometimes taboo topic and the number grows every time someone watches the video on the donation page.


Sini with Kathleen Hanna

The day before the campaign went live I found myself sitting with friends, talking about crowd funding. The conversation was going in the direction of feeling asked for money almost on a daily basis. That every project they saw posted was an awesome idea and worth the investment but they just didn't have that much money to give. This left me feeling guilty for being on the other end, the one that is standing beside the artist, asking. But it's important to remember that crowd funding is sometimes the singular resource for not just queer artists, but all artists, and fundraisers. Sini's campaign shows us how important it can be, it can even save a life.

I know my herstory, or I try my best to. I have Holly Near & Fanny Vinyl right next to Team Dresch and Julie Ruin. I got into this business because I am a fan. I make my living running a queer record label and I feel very lucky to do so. This does raise a red flag in the industry I love. The artist that are living tour to tour / project to project - more than likely do not have a 401K, they are lucky to have insurance period. These artist provide the soundtrack to our lives, inspire us through their every medium - connect us together as a community through their work. What's going to happen to these artist and activist as they encounter illness and age?

Its not an easy question to ask. It's a hard dialogue to take on. We are at the mercy of private sector health care in this country and it scares the hell out of me. Not just for my own health but for everyone. Sini, is one of many artist that has helped the queer arts movement become what it is today. Her art has helped shape everything from our politics to our gender identity. I encourage you to give if you can and please share with every social media outlet that you are connected to. This is more than making an album or scoring a film, we have a chance to save a life.



Comments [7]

melissabeth's picture

Thank you so much for this,

Thank you so much for this, Gina - you are such an integral part of this community. xoxoxo

Marcie Bianco's picture

Science Friday tackled Lymes

Science Friday tackled Lymes recently:

 http://podcastdownload.npr.org/anon.npr-podcasts/podcast/510221/153733968/npr_153733968.mp3?_kip_ipx=98617982-1338585878

softanimal's picture

thank you for this article, and also some hard-to-say thoughts

first and foremost, thank you for writing this article. and thank you to sini for being brave enough to ask for help (i know how difficult that is) and to her community for coming through in such a miraculous way. thanks also to both of you for raising awareness about the devastation lyme can cause.

i have late-stage lyme, too. i've had it most of my life, was bedridden for about a year or more seven years ago. the disease nearly killed me. it's a miracle i'm alive at all, and i try to remember to be grateful to my body each and every day i wake up. my story is heartbreaking, as are the stories of so many with this disease. i have no family support, and no partner. i can barely afford rent and food, let alone treatment. i am at serious risk for homelessness in the near future if things don't change, and fast. i, too, started an indiegogo site for myself. the difference? i've raised $2600 in about 1.5 months' time. please don't get me wrong -- i am so, so thankful for every single person who's donated and/or shared the link. words can't express my gratitude, in fact. but the fact is that i'm just some no-name queer woman fighting for her life. i'm not famous. i'm an artist, too - a poet, musician, visual artist - but i've been so sick for so long that there's been no hope of getting my work out there, and very little opportunity for even developing that work in the first place. because of the fact that no one knows my name, there is no way on earth i could ever hope to raise even a fraction of what sini's partner and friend raised for her. so as i watched the money pour into sini's campaign, my heart both rejoiced and hurt in ways too complex to put to words. i am happy for sini. she deserves every penny. but i deserve to live, too, and i am tired of the culture of fame that pervades every aspect of our lives, even within the most progressive of queer communities. in fact, my fundraiser has been extremely successful when compared to those of other non-famous folks with lyme who've launched campaigns -- i don't know a single one that has raised over $2000. i'll link you to a campaign that touches my heart deeply; like me, this man is alone. like me and sini, he has late-stage lyme. unlike sini, he is not well-known. he needs help, and what's come through for him so far is not near enough: http://www.youcaring.com/fundraiser_details?url=supportralphhendersoninf... .. the difference in the response to ordinary folks' medical fundraisers and the fundraisers of folks with any amount of cultural recognition/fame is staggering. so many people are suffering. so many desperate and dying with this illness. please don't let one successful campaign prevent you from seeing the rest of us.

sini has given so much to the queer community and the world at large. i'm happy she's being supported through this awful disease. but the truth of it is this: the queer community (or any community at all; ours certainly isn't rare when it comes to this) doesn't rally in this way for folks who are not well-known within our community. i believe that everyone, regardless of how famous their name/work/art, deserves that same beautiful outpouring of support. we all give in the ways we're able. this illness robs lives, it forcibly isolates you from your community, and if you're sick for long enough it robs creativity and possibility as well.

blessings of health to all of you,

heather.

ps. i feel strange linking to my fundraiser here, so i won't. but my lyme story is at the following URL, in case anyone would like to read it: http://lymenaide.wordpress.com/2010/12/11/my-lyme-disease-is-not-the-ids...

 

edit: this was really hard for me to write and i'm saddened it has gotten zero responses. i'd like to see discussion around these issues. if not here, then please feel free to email me: violinexplosion@yahoo.com. take care.

Marcie Bianco's picture

This piece is wonderful --

This piece is wonderful -- thanks for raising awareness, Mamone! As well,  this is a great example of how the queer community rallies in the face of overwhelming opposition (personal health, yes, but the medical sector even more so. It's nice to know that our community can pull it together to take care of its own.

Jenny Aisenberg's picture

word

this is righteous. also just reminded me how much lyme disease scared the shit out of me when I was a kid...damn. tiny ass little deer tick parasite fuckers. gahhhhh. 

my mom had chronic fatigue syndrome in the late 80's & early 90's, and her doctors told her it was all in her head for over a year. it really threw her life for a loop...I think being told she was imagining it by the people who were supposed to be helping her was just as damaging as not being able to get out of bed for 2 1/2 years. but honestly, this disease looks even worse. 

"We're all born naked. The rest is drag."
--RuPaul (appropriating Judith Butler for the masses...)

Marcie Bianco's picture

yeah, i actually had early

yeah, i actually had early stages of lyme when i was 11 and was one a shit-ton of meds for a few months. think it messed with my immune system for a while but catching it early was a lifesaver -- 

Jenny Aisenberg's picture

yep

my little cousin got it at camp a couple summers ago, but they also caught it early, and although my aunt says he was very sick for a few weeks, he hasn't had any problems since. I think it is the early detection that makes all the difference. glad you were ok lady Wink

"We're all born naked. The rest is drag."
--RuPaul (appropriating Judith Butler for the masses...)